Quicktopic posts: Jun 2002

[Amanda Stigle]

Hello all
Our group AGM Report, March 2001 can be viewed on this website. Access from the main menu page.

[TIm]

Hello all,

I've got KC and now wear hard contacts which help me greatly. Just 3 questions:
1). Do all sufferers deteriorate over time or do some stay the same?
2). I sometimes have cloudy vision - this usually occurs late at night when I have worn my lenses for about 12 hours. Is this a normal thing for contact wearers or is it KC related?
3). Can KC be used to get extra time in exams? Anyone ever tried and suceeded?

Thanks in advance,


TIM

tjlessells@aol.com

[Janet Manning]

Hi Tim,
I got extra time in exams, but only when I couldn't wear lenses after having stitches out after grafts. I get very little correction with glasses and didn't have any at the time anyway, because my eyes were changing so much.

I only actually requested extra time for the open book exam. The college gave me A3 size exam papers, which I could read with a large magnifying glass. Writing answers wasn't really a problem. I wrote in thick black felt tip and didn't worry about keeping on the lines, which I couldn't see anyway! I rarely have time to reread what I've written, so that wasn't a problem.

The open book exam was harder because it entailed page referencing. Words are easier to read because there is a context, but numbers are harder. I requested an extra half hour and this enabled me to cope, using the magnifying glass.

Since having lenses I haven't needed extra time. More than one exam in a day would be difficult though, because of the eye strain.

Good luck with your exams. Janet

[Mark]

Three years ago a dokter told me I had KC. Two others told me it was just astigmatism. But now one of them thinks it is KC. I have still a little help from glasses but think this won't last very long. In a few months I will travel to West Africa for 3 years. What can I expect concurning this KC? When does a dokter speak about astigmatism and when about KC?

Mark (Belgium)

[Roman]

Hello everybody,

I found this page just recently I it is a great contribution to everyone suffering from KC. I´m 25 years old having KC for 4 years in both eyes. I live in middle Europe in Slovak republic. I still wear soft lenses that correct my vision acuity but of course the KC is progressing. I n our country we have a real lack of special contact lenses for KC even I´m unable to get my special soft lenses (they are thicker than normal lenses. I tried once rigid lenses (but I was not told the type of lens) and it was horrible. I cannot imagine to wear RGP for the whole day. I do have a good and experienced doctor who is dealing with KC over 30 years but we have a lack of "treatment option" in our country ( such as suitable lenses) My questions :
1) Is it possible to wear RGP for more than 8 hours a day ?
2) Can you give me any advice where I could find lens fitter in any surrounding country in Europe with a variety of lenses I could try on ?
3) I´m really fed up with my eye problem and I was considering corneal graft but after reading a lot of articles about it I find it as the last step for KC man.Please tell me your after graft experience (vision acuity, if you still have to wear lenses or spectatles are enough, rejection issues, healing process).

Thank you very much for your opinions. You could also send me e-mail to romanz@zoznam.sk

[TIm]

Thanks for your reply Janet,

I may try and get some extra time for open book exams too. Even though my eyesight is OK with lenses I don't think I can read as quickly and clearly as others so I think I deserve it. (Plus I might pass with extra time!!!).

By the way people - I study Russian language, I went to lessons for over a year at university with no contacts! It was hell! My reading speed of Russian was terrible - it was almost imposible to read the Russian (especially considering the alphabet is different anyway and letters often look alike). I don't know why I didn't get help sooner for my KC. Anyway, I have now. If you have KC get some help. Don't just struggle on.

On hard lenses: They aren't nice but you get used to them after a while. Try saline solution to put them in and eye-drops for comfort if they become dry. Wear sun glasses in the summer to stop grit/sand in your eyes. Eventually you should be able to wear them for 12-14 hours. They are great really. My quality of life would be relatively c**p without them.

TIM.

[Sue Ingram]

Dear Tim, I got extra time in my written massage exams due to KC, so it is definitely worth a try. I had to get a written letter from Moorfields confirming that I had the condition and that my vision was affected.

With regard to deterioration of KC; it seems that everyone is different but that there is usually some deterioration. I believe it is possible for KC to stabilise though (often between 30-40 yrs old) and not to get any worse, which is what we are all hoping. But at the end of the day, it does seem to affect everyone differently.

I cannot help you on whether the cloudy vision is due to contact lens wear or KC - perhaps someone else has experienced this problem? Take care. SUE

[Sue Ingram]

Dear Roman, Welcome to the KC Discussion Page - its great to see we are connecting to people throughout the world now, and hopefully helping them.

With regard to a practitioner, you could contact Ken Pullum in England who has many years' experience in fitting contact lenses on KC sufferers. You will find his website is linked to the KC website - http://www.sclerals.com.

Wearing lenses for more than 8 hours a day - a necessity! I believe all those with KC will tell you so. I am not saying this is good for your eyes, but unfortunately I have to wear some sort of lenses from the moment I get up in the morning until the moment I go to bed. If you are still able to wear spectacles around the house etc, then I would encourage you to do so as much as possible to give your eyes a rest from the lenses.

I have had KC for at least 25 years and have managed so far not to go the graft route by wearing a combination of contact lenses; sclerals, rgp corneals, piggy-backing both sclerals and rgp corneals with disposable soft lenses - you name it, I've tried it! I believe the way to go is to try and manage KC without a graft as long as possible, but obviously everyone's situation is different and if it gets to the point that surgery is required then so be it. I am sure those who have had successful grafts can answer all your questions for you.

Take care and try not to let your KC get you down too much. Keep smiling (-: SUE

[John Smith]

Hi Tim,

To answer your point about cloudiness, I used to suffer that too, when I was previously wearing RGP lenses, long before being diagnosed with KC.

My optician told me that it was because the lenses were not permeating enough oxygen to the corneas, so the eye was "taking on water" to get the oxygen. I'd recommend visiting your optician pronto, as my problem was cured by a change of lens material.

[John Smith]

Hello All,

It's been a little while since I posted here, and as I saw my consultant for my review today, I thought I'd pop in and say hello!

At the 5-months post-graft stage, my operated eye is getting better and better. My shortsightedness has stabilised (back to my "natural" level due to the shape of my eyeball), and my astygmatism is now half of what it was in April.

After 3 months of using "Maxidex" dexamethasone drops, the pressure in my eye was reacting by greatly increasing. So much so, that I actually went completely blind in that eye for a few seconds after standing up! I'm now using FML drops instead, and all is well.

Because of the continued change in my vision though, I'm still being asked not to even wear glasses; although the likelihood is that I'll be back in the land of the sighted after my next visit in 8 weeks time.

This is fantastic news, as my left eye has suddenly decided to go into overdrive. Since March, when I could read 4 lines on the chart, I can now see 1-2. The cone has steepened, and I have new scarring in the centre. The new shape also means that my existing RGP lens (which I'd be lost without) is now causing abrasions too.

I haven't heard from the others who had their grafts back in January - are you doing OK guys?

John